Good morning Readers!
Alexa and I (Stephanie) want to first say how grateful we are for all of the support! Like really, this is so incredibly crazy to see our dreams happening before us. We thought we would kick off the blog by giving you some background on us and our family!
Let's meet the fam
Mom- Rose
Dad- Steve
Oldest brother-Jonathon (25)
Myself- Stephanie (23)
Sister-Alexa (19)
Youngest brother- Anthony (11)
Eleven years ago things were very different in our household. Back when we lived in the good ole Elmwood park, we had the life. Not in the oh-so-rich-with-money life. The kind of life money couldn't buy. We were rich off of pure, genuine happiness. Things were easy. We both danced and the only concern we had was making it big enough to become prima ballerinas. Ugh. I lived for the countless hours we spent in the studio, or the early morning Nutcracker rehearsals. We were always doing something. Even through our busy dance schedules we had to squeeze in time the soccer tournaments we went to for Jonathon. We could have sworn that we was going to become the next great face in the soccer world. But everything came to a very quick and sudden halt.
We moved out West to a town called Carol Stream. This meant NEW everything. Friends, school, house, dance studio... Life! I could never forgive my mom for pulling me away from the only thing we all new. But a few years down the road mother would spring even more life changing news on us.
A baby. "WHAT!" I (Stephanie) screamed. Gross! "Like how is that even possible," my 12-year-old self asked. (I just learned how babies were made by the way, so you could only imagine what was going on in my head.) I did what any typical tween would do. Yup. I "ran away." I made it as far as the drive way when I realized my dad was standing right behind me. He obviously ruined my plans of feeling like a desperate girl. I planned to go sit on a swing and cry... you know how the movies portray it.
A baby. "WHAT!" I (Stephanie) screamed. Gross! "Like how is that even possible," my 12-year-old self asked. (I just learned how babies were made by the way, so you could only imagine what was going on in my head.) I did what any typical tween would do. Yup. I "ran away." I made it as far as the drive way when I realized my dad was standing right behind me. He obviously ruined my plans of feeling like a desperate girl. I planned to go sit on a swing and cry... you know how the movies portray it.
(My goal)
Enough of the melodramatics. ANYWAY. Nine months went by and little baby Anthony was born. After we got over the extreme dramatization, he became everything to us. But three months into his new being he started doing something really odd. Contracting his stomach and throwing up his arms as if he was being punched. Twenty of these "things" and bloody murder cries later, we desperately awaited the doctor to return our call. The pediatrician, acting as clueless as we were, advised us to come into the office the following day.
"He just has a lot of gas, try this, it will help." Was the typical response. We knew it wasn't right. We landed an appointment with a neurologist at Rush hospital not fast enough. These "things" were now labeled as infantile spasms, and these spasms grew in number. Twenty turned to SIXTY in one episode! Anthony was having sixty spasms per episode and up to SIX episodes a day. What were infantile spasms you may be asking? Seizures.
He was diagnosed with something called West Syndrome. An idiopathic syndrome. Meaning no reason no cause, and no trace of epilepsy in our blood-line. We had to get this under control. Seven failed medications later, we were losing all hope and money. We finally discovered what we thought was the light to the end of our tunnel. A diet call The Ketogenic Diet. An extremely strict diet. Very high fat, low carbs and low sugar. The thought behind it was Anthony's body would produce more keytones than normal making the brain concentrate mostly on that and distract it from producing the seizures.
Well it all sounds too simple to be true. The hospital screwed up the diet and Anthony's seizures were worse then ever.
At seven months old we finally found a hospital with more knowledge about the diet. They helped us get in under control and on the right track. Anthony soon became the youngest person known to stop seizing via The Ketogenic Diet. We did it! Finally! Life could calm down for a minute, right? NO.
What I haven't mentioned yet was my dad's mom (Grandma Ruffino) was simultaneously dying slowly, but surely in a different hospital. What else could happen? Well the worst of course. Not more then a couple weeks from Anthony's last seizure, grandma Ruffino (our angle) died. Just when we thought things couldn't get any worse. It happened.
"He just has a lot of gas, try this, it will help." Was the typical response. We knew it wasn't right. We landed an appointment with a neurologist at Rush hospital not fast enough. These "things" were now labeled as infantile spasms, and these spasms grew in number. Twenty turned to SIXTY in one episode! Anthony was having sixty spasms per episode and up to SIX episodes a day. What were infantile spasms you may be asking? Seizures.
He was diagnosed with something called West Syndrome. An idiopathic syndrome. Meaning no reason no cause, and no trace of epilepsy in our blood-line. We had to get this under control. Seven failed medications later, we were losing all hope and money. We finally discovered what we thought was the light to the end of our tunnel. A diet call The Ketogenic Diet. An extremely strict diet. Very high fat, low carbs and low sugar. The thought behind it was Anthony's body would produce more keytones than normal making the brain concentrate mostly on that and distract it from producing the seizures.
Well it all sounds too simple to be true. The hospital screwed up the diet and Anthony's seizures were worse then ever.
At seven months old we finally found a hospital with more knowledge about the diet. They helped us get in under control and on the right track. Anthony soon became the youngest person known to stop seizing via The Ketogenic Diet. We did it! Finally! Life could calm down for a minute, right? NO.
What I haven't mentioned yet was my dad's mom (Grandma Ruffino) was simultaneously dying slowly, but surely in a different hospital. What else could happen? Well the worst of course. Not more then a couple weeks from Anthony's last seizure, grandma Ruffino (our angle) died. Just when we thought things couldn't get any worse. It happened.
Even though this is just the beginning of our story, reliving these moments are not easy, but it reminds us that we would not be the people we are today if we hadn't been through these lows. Support means the world to people whether they verbally ask for it or not. You can change someone's day, even life, just by letting them know that their story matters. Everyone has a different way of expressing themselves, and as cliche as it may sound, a smile means the same thing in every language. Life doesn't have to be RUFF. Let's be on the same team. We challenge you to let someone know that their story counts! We can do this!!!!!
Xoxo, the RUFF*sisters
P.S.
This is a very BRIEF explanation of everything. We have great plans to share in detail every aspect of it all.
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